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Mutiple Tapers/long haulers/high dosages


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Hi BD - yes the double cut was quite the mistake!  It was a 15% cut and it caused some serious brain issues.  I had to hold for around 2 months or more and when I did make a cut - it too was rough.  Thank you - yes I am getting better and it is slow!  I realized I had made the mistake 6 days into the cut but thought I have already gone 6 days and did not want to go up in dose to what I was supposed to cut to.  Boy was that a mistake I will not make again.  I am so careful when I do my pillbox for the week but brain fog has been an issue for me this whole time.  I did that in October last year and that is when the off balance and dizziness and ear issues started and they have not stopped - they come and go but when they come - like today - it was rough and it is hard to be chipper when you feel like crap and like you are going to fall down constantly!!  I really believe being on the cold turkey really hurt my brain - I pray to recover completely.  I am just realizing some of the things the CT did to me.  It is scary sometimes but I try to not think about it.  I want to focus on now. 

 

Yes we have been comrades for a while now and I may not always respond to your post on other threads, I do read them sometimes because you are so wise, so compassionate and so caring, and it does not matter if the subject pertains to what I am going through or not - Just reading the heartfelt and real and kind things you post gives me encouragement and makes me feel better!  I look for threads and posts that are positive when I am not having a good day or if I am in a rough spot and I can always count on you to lift me up.  And when you are having a rough time, I want to be kind, supportive and encouraging to you!  You truly have helped so many people.  You write beautifully and I give you credit for being able to do that at the high dose of medication you are on and with the problems you have had tapering.  You are a rock star!!!!

 

We can all do this together!

 

I loved what you wrote about taking a walk with your husband, that was so sweet.  I love that after 35 years of marriage that you still hold hands.  My husband and I went through some hell with others before we found each other 8 years ago.  He is my rock and he is so supportive and is my biggest fan!  We were brought together by God and I am so thankful every day that we have each other!

 

One of the things I have in my tool box - as you say  :), is to think about and sometimes write down things I am grateful for - on days when I am not feeling well - it helps me to think in a positive way and even though this is hell on earth that we are going through - we all have something to be thankful for!  If nothing else - the fact that we woke up today, have food to eat and clothes to wear.  It does not have to be anything elaborate, just something that makes you smile.

 

Sorry this was so long - I hope you will have a better night and an even better day tomorrow.  Know you are in my prayers daily and I will continue to pray for you to get better and feel good again!

 

Love,

Julia  :smitten: :smitten:

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Great work Ultra! Also, very encouraging. It is going to take me many years to taper unless my body decides to let me make bigger cuts then what I can do now. :smitten:

 

You'll probably be surprised. The taper rate will go up and down over time. That's fine though...you'll be going in the right direction!!

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Hi BD,

 

  I am so glad you have your husband. What a rock for you, he must be. That's great. I missed my magnesium and melatonin last night. I'm not sure if it played a role or not but I didn't sleep last night. I hope I have a better night tonight. I am plugging through the day today despite being tired. My next cut is tomorrow afternoon if all goes well.

 

 

Have a great Thursday,

 

HM

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My last 3 doses of 2.75 have all paradoxed, including my am dose this morning. It's back. Yesterday was one of the worst days I have had in a long time. It's an undermed, but when it comes to a paradox, it doesn't matter.  Considering my options.
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My last 3 doses of 2.75 have all paradoxed, including my am dose this morning. It's back. Yesterday was one of the worst days I have had in a long time. It's an undermed, but when it comes to a paradox, it doesn't matter.  Considering my options.

 

BD - I am so sorry you are suffering!  I wish there was something I could say to help.  Know you are in my thoughts and prayers!  You really deserve and need a break! 

What options do you have?  I am hoping there is something that can relieve your suffering.

 

Love,

Julia  :smitten:

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Options are to change the dose. Yesterdays paradoxes took me to a whole new level of pain. Then, it happened again this morning. Usually, the only way to make it stop is to change the dose. Spent a long time trying to decide which way to go. Decided to updose number 2. I am 55 minutes in, and it's not paradoxing. Had no idea if it would or not.  Will go back to 2.75 dose 3.

 

Part of this is migraine medication I took yesterday, it always throws off the xanax. It can took a few days to recover. It is cross tolerant with benzo's.  Looked through my notes to decide  if I should go up or down. Usually up worked, down did not.

 

I lowered dose 3 yesterday to try and stop the paradoxing, and it was the worst paradox I think I have ever had. Considering that, I elected to go up dose 2 today. Had no idea what I would get.

 

Will resume  2.75 tomorrow morning as well, and see if it behaves. I have done this before, after the migraine med, updosed number 2 while I wait for it to leave my system.

 

I choose not to see this is a fail, but a medically induced situation caused by the migraine medication.

 

I am eager to get back down to all doses at 2.75, might take 1 more day before I can do it. It has been rough, but I was just stating to see some improvement before yesterday.

 

 

 

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BD,

 

  I am sorry your having issues with paradoxing. Hopefully, the symptoms are tolerable. Who knows what is happening in the brain when you paradox. If you don't take your doses you get interdose WD and when you do, you paradox. I hope your changes to your doses make the difference for you and stop the paradoxing. I don't have paradox anymore but I worry my cuts might be too much. I just cut Friday and so far I am the same. I have the GAD and the insomnia for the most part. My GAD is better today but my insomnia last night was typical for me. My usual couple/few hours interrupted by fireworks going off.

 

Anyway, BD, it's good to hear from you. Wishing you stabilize soon so you can forge ahead with your taper.

 

Happy Monday,

 

HM

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Heart

 

Everyone I have interacted with over the years really struggles at the end. I hope your cut is tolerable.

 

I am amazed by how far you have come. And proud of you. :smitten:

 

 

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BD,

 

That's what I hear. That it will get harder as I get lower. I am waiting for that to happen but I am still pretty high in dose so maybe it will be a while. At least i have a stock pile of meds in case they cut me off. I am worried about that. Just hoping my stash lasts me to jump day.

 

HM

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Baddove - I feel so bad for you! I hope the changes you are trying help you!  A person can only take so much suffering!

 

Love and hugs to you!

Julia  :smitten:

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I took dose 3 (final dose) back to 2.75. Not a paradox, but def in wd. 2 hours in I started doing a 1 hour hard yoga. Then I made dinner for my man. Then a breathing yoga. Then very loud dancing and music. Then a short hard yoga (my body is screaming at me) Just now stopped. I have been in motion for a solid 2 hours.

 

Using everything in my tool box except going out.

 

I have spent so much time just sitting, and it doesn't work. Time for active Grandma to get on it.

 

Happy Birthday again, I am pleased it wasn't a bad day per PTSD, and you seem calm and ok. Glitches totally expected, but you did good girlfriend in taking as much control of where your head was at as you could. Commendable. Put a big plus sign in the accomplishment box.

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I took dose 3 (final dose) back to 2.75. Not a paradox, but def in wd. 2 hours in I started doing a 1 hour hard yoga. Then I made dinner for my man. Then a breathing yoga. Then very loud dancing and music. Then a short hard yoga (my body is screaming at me) Just now stopped. I have been in motion for a solid 2 hours.

 

Using everything in my tool box except going out.

 

I have spent so much time just sitting, and it doesn't work. Time for active Grandma to get on it.

 

Happy Birthday again, I am pleased it wasn't a bad day per PTSD, and you seem calm and ok. Glitches totally expected, but you did good girlfriend in taking as much control of where your head was at as you could. Commendable. Put a big plus sign in the accomplishment box.

 

Hi Baddove,

I hope all the yoga and movement help you!!  I am glad you did not paradox with your 3rd dose.  Hopefully the WD will get better too.

 

I agree that sitting does not cut it.  I do the best I can with the arthritis I have.  Some days are easier than others.  I applaud you for doing what you do!

 

Thank you again!! I am very happy it was not a bad day.  I was glad I was able to get through today without letting things get to me too much!  Yes it was a big accomplishment!  I appreciate all your love and support - it helped to make this a much better time for me.  I will always remember how you shared what you did with me and how much love you have sent my way!

 

There were a couple glitches but I made it through them ok. 

 

Take care and I hope tomorrow is a better day for you! :smitten:

 

Love you!  Julia

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Hello,

I want to thank Baddove, Mary, Debbie, Laurie, HeartMost and EnzoIt for the birthday wishes, encouragement, support and love shown to me yesterday and the last couple days before that as I was dealing with a very hard and emotional time.  It helped me more than you could possibly know and I am so appreciative that you all were there for me!  You all made this time a lot easier to get through and I actually had a better birthday than I have had in a long time.  Thank you!

 

I am still dealing with some off balance and stomach issues but I know they will get better with the past few days behind me, for another year!

 

I just wanted you all to know how much I appreciate you and love you and it was nice to know how much you care!  It amazes me that people that I have never met care more about me than my family and other so called friends did as I went through this time.  I will never forget how you rallied around me and helped me!

 

Love and hugs and prayers,

Julia  :smitten: :smitten:

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Good morning, everyone,

 

  I am curious to hear how everyone is doing today. Other than my ever present sleep issues, I am doing OK. My cut last Friday seems to be sitting OK. I wish my sleep would improve as I get lower in dose, but I guess that's asking a lot. I know my brain is healing as a I taper, so who knows.

 

Hoping you all have the best day you can have,

 

HM

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Good morning, everyone,

 

  I am curious to hear how everyone is doing today. Other than my ever present sleep issues, I am doing OK. My cut last Friday seems to be sitting OK. I wish my sleep would improve as I get lower in dose, but I guess that's asking a lot. I know my brain is healing as a I taper, so who knows.

 

Hoping you all have the best day you can have,

 

HM

 

HM - just some off balance issues and stomach pain but it will pass.  I am so glad you are doing well on your cut - that is awesome!  I am sure your sleep will get better.  I hope soon!!!

 

Love and hugs,

Julia  :smitten:

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What a great group.  How is everyone?

 

If anyone would know, it would be all of you.  Long-haulin’ isn’t easy.  At what point do you give up on holding and try a significant updose?  I need a bit of functioning back, due to my circumstances.  Though I know it’s not guaranteed.

 

I’ve done two small updoses, but doubt that’s enough as I now know I tapered too much too fast.  Probably wouldn’t have been too fast we’re it not for the detox assault.  Is it stupid I’m considering updosing more or trying to add some of my original drug back in? 

 

Big Love to all of you ❤️

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What a great group.  How is everyone?

 

If anyone would know, it would be all of you.  Long-haulin’ isn’t easy.  At what point do you give up on holding and try a significant updose?  I need a bit of functioning back, due to my circumstances.  Though I know it’s not guaranteed.

 

I’ve done two small updoses, but doubt that’s enough as I now know I tapered too much too fast.  Probably wouldn’t have been too fast we’re it not for the detox assault.  Is it stupid I’m considering updosing more or trying to add some of my original drug back in? 

 

Big Love to all of you ❤️

 

In my experience I feel my sxs are due to glutamate damage from a terrible crash into acute wd two years ago and they'll never go away with any updose. I just have to get used to living with this new brain and taper at snail pace. Just my experience of course.

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What a great group.  How is everyone?

 

If anyone would know, it would be all of you.  Long-haulin’ isn’t easy.  At what point do you give up on holding and try a significant updose?  I need a bit of functioning back, due to my circumstances.  Though I know it’s not guaranteed.

 

I’ve done two small updoses, but doubt that’s enough as I now know I tapered too much too fast.  Probably wouldn’t have been too fast we’re it not for the detox assault.  Is it stupid I’m considering updosing more or trying to add some of my original drug back in? 

 

Big Love to all of you ❤️

 

In my experience I feel my sxs are due to glutamate damage from a terrible crash into acute wd two years ago and they'll never go away with any updose. I just have to get used to living with this new brain and taper at snail pace. Just my experience of course.

 

Thank you Vali, that helps a lot.  This is the case for me, so I guess it’s better to hold and wait for that damage to resolve.  My crash was gearing up last summer and went boom in November.  How are you feeling these days? 

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What a great group.  How is everyone?

 

If anyone would know, it would be all of you.  Long-haulin’ isn’t easy.  At what point do you give up on holding and try a significant updose?  I need a bit of functioning back, due to my circumstances.  Though I know it’s not guaranteed.

 

I’ve done two small updoses, but doubt that’s enough as I now know I tapered too much too fast.  Probably wouldn’t have been too fast we’re it not for the detox assault.  Is it stupid I’m considering updosing more or trying to add some of my original drug back in? 

 

Big Love to all of you ❤️

 

Hi Unicorn74,

I am so sorry that you have had such a rough time!  I read your signature and some of your blog - OMG - what a story of going through hell!

 

It is just my opinion, as someone who has also went through a CT, that you have never stabilized since the detox.  Once you go through a CT, it seems your CNS has a very hard time stabilizing.  I was in CT for over 6 months and when I was sent to a pshy doctor because no one could figure out what was going on with me, I was put back on xanax and doses kept going up and up until it got to 4 mg a day.  It was between 3.5-4 mg when I started tapering but it took well over a year to stabilize after I was put back on xanax. I was like you are now and not able to function.  It has been hard and it has been 30 months since I started this taper but will be at .4688 with the cut I am going to make Sunday, but it has been hard and I believe it is because of the CT.

 

There have been a couple times that I had to go up in dose but only a little bit.  That happened the beginning of this year.  It has been very hard since I got below 1 mg a day but part of that is because I messed up by doing an accidental double cut last November.  It has been so much harder for me to taper since then but I keep going.

 

I want you to know I understand how disabling a CT can be.  Personally if it were me, if you have had a rough time with valium ever since you crossed over, you may want to consider going back to the K and stabilizing and then taper.  If it was easier for you on the K than the valium, I would consider it.  You do not deserve to be suffering and not able to function.  Your also going through a situation in your personal life that is not good either so you really need to be able to function and take care of yourself and it does not sound like you are at this point.

 

I would consider going back to the dose of K you were on before the crossover and if you can stabilize from that, then attempt the taper, but slowly. 

 

Given your situation, it may be worth talking to your doctor about or pshy doc.

 

I am sorry you are suffering.  I will keep you in my prayers.

 

Hugs,

Julia  :smitten:

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What a great group.  How is everyone?

 

If anyone would know, it would be all of you.  Long-haulin’ isn’t easy.  At what point do you give up on holding and try a significant updose?  I need a bit of functioning back, due to my circumstances.  Though I know it’s not guaranteed.

 

I’ve done two small updoses, but doubt that’s enough as I now know I tapered too much too fast.  Probably wouldn’t have been too fast we’re it not for the detox assault.  Is it stupid I’m considering updosing more or trying to add some of my original drug back in? 

 

Big Love to all of you ❤️

 

Hi Unicorn,

 

I think Julia's suggestion is worth a try. I am sorry you're not stabilizing. I hope soon that you do. Keep us posted as to what you decide to do and your progress.

 

Take Care,

 

HM

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Hi, How is everyone doing?

 

Julia, your reply means a lot to me.  Thank you so much for taking the time to check out my history, my blog and giving your honest opinion.  You are 1000% correct, I have not stabilized since the detox.  When I started to get a little betterment and some hint toward stability happening, I started tapering.  It helps a lot to hear about your experience, but I’m so sorry you had to go through a CT.  They are so so awful.  I feel like it’s true, once a CT (or multiples) the CNS is so in need of as much stabilization as it can get.  Then, we can move forward with care.  It gives me hope that you did get stabilized in a year.  Functionality is so important, I just took all the wrong advice of “just get off the drug” and had no idea what this could be like and for so long. 

 

Congratulations on how far you’ve come, what a milestone you are at.  You must be thrilled to be so low in dose from where you were!  No doubt that it’s been difficult, I can certainly empathize.  It’s so nice to be able to relate and have someone understand how it is tapering on a CT and crashed nervous system.  I simply don’t relate to many because of this, so it makes me feel like something is wrong with me.  So, thank you again for relating,  I do hope you are maintaining a level of function and quality of life.  I think that can make a world of difference for us.  All of us! 

 

Ok so, I have an appointment with this benzo wise doc on Weds.  I’m really scared to make any moves, but something has got to give in some way.  This weekend was another rage episode from my partner, and the threats.  So I must try to do something to get some basic functioning back.  I hope it’s not too late, even if it does take some time.  I’m like rabbit frozen in headlights in this environment.

 

We will see what this doctor suggests.  I’ve not left the house in so long, but this is important and must be done.  I’ll let you know what he suggests.  You all may have some grounded ideas about it.  I would love to somehow get off the Valium and back to K but I’m worried it would be hard.  But, it would be so awesome if it worked out. 

 

HeartMost, thank you for giving your opinion and support.  Thank you both for caring!  It means so much!

 

Big Love,

 

Uni

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Uni,

 

I am sure Julia will respond as soon as she gets a chance. I just want to say good luck with your doctor appointment on Wed. I hope it helps you.

 

Hope this Monday has been kind to you. Take Care,

 

HM

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Thank you, HM!  You are so kind.

I hope today has been kind to you, as well. 

 

How are you doing?

 

Hugs,

 

Uni

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Hi, How is everyone doing?

 

Julia, your reply means a lot to me.  Thank you so much for taking the time to check out my history, my blog and giving your honest opinion.  You are 1000% correct, I have not stabilized since the detox.  When I started to get a little betterment and some hint toward stability happening, I started tapering.  It helps a lot to hear about your experience, but I’m so sorry you had to go through a CT.  They are so so awful.  I feel like it’s true, once a CT (or multiples) the CNS is so in need of as much stabilization as it can get.  Then, we can move forward with care.  It gives me hope that you did get stabilized in a year.  Functionality is so important, I just took all the wrong advice of “just get off the drug” and had no idea what this could be like and for so long. 

 

Congratulations on how far you’ve come, what a milestone you are at.  You must be thrilled to be so low in dose from where you were!  No doubt that it’s been difficult, I can certainly empathize.  It’s so nice to be able to relate and have someone understand how it is tapering on a CT and crashed nervous system.  I simply don’t relate to many because of this, so it makes me feel like something is wrong with me.  So, thank you again for relating,  I do hope you are maintaining a level of function and quality of life.  I think that can make a world of difference for us.  All of us! 

 

Ok so, I have an appointment with this benzo wise doc on Weds.  I’m really scared to make any moves, but something has got to give in some way.  This weekend was another rage episode from my partner, and the threats.  So I must try to do something to get some basic functioning back.  I hope it’s not too late, even if it does take some time.  I’m like rabbit frozen in headlights in this environment.

 

We will see what this doctor suggests.  I’ve not left the house in so long, but this is important and must be done.  I’ll let you know what he suggests.  You all may have some grounded ideas about it.  I would love to somehow get off the Valium and back to K but I’m worried it would be hard.  But, it would be so awesome if it worked out. 

 

HeartMost, thank you for giving your opinion and support.  Thank you both for caring!  It means so much!

 

Big Love,

 

Uni

 

Hi Uni,

Wow - that is so great that you have a doctors appointment Wednesday!  Just 2 days away and I hope and pray the doc will give you some good advice and will help you!  You deserve it! 

 

I agree that a CT messes with our CNS so bad and it really sensitizes us to alot of things.  It did for me, it was hell and I can relate to the hell you in right now.  My heart goes out to you! 

 

I did stabilize in a year or so but I also want you to know that while that was happening, I was already getting better.  I was able to do things that I could not do when I was so sick and so many of the things that happened when I was in severe withdrawal from the CT, like being allergic to everything even my own clothes, the panic attacks, and so many other horrible symptoms I was having got better and as a matter of fact, I have not had a panic attack since I started tapering. I had never had them before the CT and they were constant and a everyday, hours at a time things.  I started being able to function even before I was completely stable.  There is hope in that.  You don't have to wait to be completely stable to start feeling better.  Thank goodness.  I do have what I call anxiety attacks sometimes but they are not the same as a panic attack and I had always had that before the CT.

 

Yes, I definitely relate to the CT and CNS problems.  I hear you and understand and certainly feel for you!  I am glad my relating made you feel better about your situation.

 

Uni - I promise you, it is not too late for you!  You still have breathe in your body so therefore it is not too late!  That is how I feel about it.  I believe that you are going to get better, get stable and when you are ready, taper in a slow and safe way!  We are here for you.  Do not feel alone or feel hopeless.  We can do this together.  All of us here are here to support you and encourage you!!!

 

I hope that you will be able to go back to the K too since you say that was better for you.  That is another thing - crossing over to valium is not for everyone!  Some people do not do well on valium and it sounds like you may be one of those people.  It may be hard to go back to K but I would not think it would be harder than what you are going through now. There is also the positive side that it might not be hard.  :)

 

In my opinion, I would just be honest with the doctor and tell them how you feel, what you have gone through and it may be a good idea if you are comfortable with it, to share with them that you have a support system here with people going through what you are.

 

I wish you good luck and look forward to hearing how things went and how you are feeling.

 

Take care of yourself.  Remember - you are not alone.

 

Hugs and prayers,

Julia  :smitten: :smitten:

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